AR
UR
Parents of children with autism have shared the challenges faced due to tens of thousands of dirhams in cost to fund essential treatment for their children. From doctor's visits and therapy to school fees, all factors pile pressure on the financial stability of parents who are willing to provide the necessary support to their children.
On World Autism Awareness Day, Dr Mohammad Raad spoke with the media, noting that he has spent more than Dh1 million ($272.200) to date on the treatment and education of his seven-year-old child.
He said that he is happy to ensure all possible efforts to ensure the his son thrives, but is concerned about the cost of such efforts.
“If you have got this diagnosis, you are going to be spending a fortune," said Dr Raad, a senior academic and physician who divides his time between UAE and the UK.
Division of the cost
He explained that he gets a monthly bill of Dh50,000 for his child which includes Dh24,000 for therapy, Dh4,000 for school, Dh3,000 for speech/language, and Dh6,000 for a shadow teacher.
At the same time, he pays for private swimming lessons for his son. He also has a specialist nanny, who is a paediatric nurse, for his son which costs Dh5,000 per month.
"We also have to be buying sensory materials. This is not to mention a special organic-only diet, totally sugar free, with only freshest ingredients as advised by a nutrition specialist for neuro-development," he added.
Parents must be prepared
He went onto advise parents to stay educated and aware about the condition. It is important to conduct thorough research on the most cost-effective support methods available. He pointed out that CLM (competent learner model) a system used in the US, can be effective.
"It costs very little to join CLM compared to everything else and you don't waste any time," he added.
In case, parents are not able to afford it, they must learn about various ways they support their child.
"You always have to allow for your own education as a parent, that could be buying books, or it could be joining an online course. There's a lot of free stuff out there, a lot of resources and charities too," he added.
What is autism?
According to the World Health Organisation (WHO), about one in 100 children globally is believed to be on the autism spectrum. This condition is characterised by difficulty faced in communication and restrictive or repetitive behaviour.
Some of the symptoms include repetitive speech or phrases; lack of imitation of other people’s actions and emotions; atypical, repetitive and restricted play; engaging in repetitive movement such as hand flapping or finger flicking and oversensitivity to sound.
In April 2021, the UAE Cabinet approved the National Policy for People with Autism. The policy has defined various ways to ensure the provision of accessible services for people with autism, ranging from inclusion in education and wider society as well as training more qualified professionals to boost community awareness.
The policy consists of 14 initiatives across five pillars of diagnosis, healthcare, human resources, inclusive education, and community awareness and empowerment.
High costs take a toll on families
Humaira Adnan, whose 10-year-old son Muhammad Omar Khan has been diagnosed autism, expressed concerns over the high costs of therapy and educating her child. As a result, the family has been not been able to save much for their future or their retirement. They spend anywhere between Dh150,000 and Dh180,000 on their child's therapy and education on a yearly basis. At times, they are not able to access all therapy needs for their child.
“The financial burden is that we are not like other families who can afford vacations every once in a while. We cannot spend on lavish things and buy a new car or something like that. Resources are there but our first priority is our child. His father had to cut down on his favourite things in order to get him the best treatment, the best therapy and the best shadow teacher," said Pakistani expat Adnan who currently lives in Dubai.
She is also an autism advocate who guides and helps parents to get an autism diagnosis for their child.
She underlined that Dh3,000 goes to her son’s learning support assistant, Dh3,000 for schooling, and Dh8,000 on therapy every month. Apart from these costs, there are hidden expenses when additional tests are required.
“If they request for some new intervention or a new therapy, that's an added burden, so we have to cut down on something," Ms Adnan added.
She also undertook an 48-hour-course on specific autism treatment by spending close to Dh7,000 to train herself about the illness.
"I thought that is better to get myself empowered because I'm the only one who's working with him constantly," she said.
Nipa Bhuptani, founder of Autism Support Network in the UAE, said that the cost of therapy and treatment at times break families.
"I have known families who have had to move from a three-bedroom apartment to a one-bedroom apartment just to be able to pay for these. Doctors tell them to go back to their home countries, because this cost is prohibitive," she noted.
Ms Bhuptani shared the details about the Applied Behaviour Analysis which served as a gold standard treatment for autism costing anything between Dh200 to Dh500 an hour. It could be recommended for five to 40 hours a week.
"My advice to parents is to do as much as you can before they get into school, so that you will need less support at school, at least letter of support at school. If you look at the studies that have been done on the return of investment for children with autism into therapy, then the more you invest into therapy in the earlier years, that over over time, there's lesser need as they grow up," she added.
Invest in yourself
She underlined the importance of training self for parents to reduce the cost.
"The way to reduce cost is by building your own capacity building capacity of the entire family, learn how to work with your child, learn how your child learns, and then you're able to teach them," she explained.
SOURCE: The National News